Sunday, November 29, 2009


Hi Friends (:

Hope you all had a good Thanksgiving, ours was quiet and very good. John has worked 7 of the last 7 days so I haven't updated since our last doctors appointment... but I have all of my Christmas shopping done, so horray for that!

We had our meeting with our geneticist and Kristi the coordinator last Tuesday, and the treatment has been put off another week. I am pretty... well really bummed about it, and I feel like I have been watching Evie like a hawk these last few days nervous that if things are continued to be put off her health will decline. For now, I am going to continue to pray pray pray over her little body, and so far things seem to be going okay. She has the occasional cough, and has been throwing up occasionally but it may just be normal baby stuff. I am getting weary of waiting, but I have been praying for God's perfect timing and I have to believe that this is it.

We have to decide this week if we want Evie to have a "port" placed for blood draws. It sounds like it will be in her chest, but we are going to meet with a surgeon to talk things over before we decide. I am not overly thrilled about any foreign objects being placed for any reason, but I know I need to be open to what is best for her... and being poked numerous times for blood draws sounds pretty miserable. There are risks and benefits to both, so it's not an obvious answer. We will also be doing her baseline kidney ultrasound and skeletal x-rays this week to get her ready for next Monday. Hopefully things will fall into place this time and we will get started on the 7th, that is the plan for now.

I was thinking a lot this week about what I am thankful for, and I am thankful that God has provided me with everything I need to get through any situation, and he continues to show me that every day. I have an unconditionally loving and accepting husband, a hilarious two year old to bring me joy, a beautiful blessing who has made it 10 weeks against the odds, a family and support system that goes above and beyond, and an amazing God who wraps his arms around me through it all. The thousands of beautiful things around me are just icing on the cake.

Love you friends, sorry the update is so long overdue. Hopefully I'll have more news this week.



  1. Sorry to hear that Evie's treatment has been delayed again. The port decision is a big one! We are still thinking it over for Sonya. We will be thinking of you all and praying for strength!

  2. I am always waiting w/great anticipation to see what is coming next. It's pretty clear this is no easy road to be on and we are always always always thinking about you guys. What a blessing that you are moved to share all of this with us. Thank you for that.

  3. Just wanted to say Hi. We love you guys and never stop praying for you.